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Day 71. And LB is happy again. He’s definitely turned a corner, as staff told me yesterday, and is delighting them with his humour. He is one hilarious dude. Time to start thinking about next steps. But for now I’m off to a disability conference in Finland (and some cheeky Finnish street photography) which couldn’t be better timing. 🙂

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You know that saying; that things can’t get worse? Well that’s turning out to be a load of old codswallop. After the whole CPA meeting surprise (see yesterday’s cheeky little number for details) and, as yet, no sniff of what the future might hold for LB (Don’t. Just don’t even mention support), I went to visit him yesterday evening. He was in bed, dozing. With a bitten swollen tongue. Signs of a seizure. Or size of an elephant it might well have been.

The bitten tongue had been noted and Bonjela on order. The seizure dimension overlooked. LB’s seizures have always worried the pants off me. Not least because it took about four ‘in your face’ tonic clonic epics before the docs would even entertain the idea that he might have epilepsy. We were tripping over that old ‘he’s got to learn to manage his stress/star charts anyone?’ chestnut (a.k.a. the learning disability trump card) for months.

The thought of him having a seizure, in a locked unit, unnoticed, has generated a new level of distress I can’t describe. I don’t care how old he is, and I certainly ain’t treating him like a child, but I want to comfort him, and keep a watchful eye for any further seizures. And I can’t.

Coasting at the moment on the delight of having LB back to his old self. We really did descend into a hideous space over the past few months and, in the maelstrom that created, lost sight of the funny old dude he always was. I love the unit. (Rich keeps pulling me up on this. He says my bar is set so low, in terms of expectations of support, that I’m calling something good, brilliant. Ha! In some respects I don’t care. It’s fucking brilliant in my book. And I love it).

What I can’t quite get my head around, is this adult rights stuff. LB may, or may not be returning to school tomorrow. We don’t know. We don’t need to know (arguably). He’s an adult. His section 2 finishes on Tuesday. This was discussed at the team meeting last Monday; mental health, mental capacity and his right to choose to come home. We’ve openly said, and said to LB, that we think he’ll benefit from staying longer in the unit. He’s a bit hesitant on this, but not dismissing the idea. There seemed to be some agreement on this at the meeting. When he was admitted he “wasn’t right” (to quote someone whose known him a long time). In the last month, he’s been removed from any stress (other than being somewhere he didn’t want to be at the beginning) and hung out in an environment that’s comfortable, warm, clean, friendly, with good food, constant attention (or space to withdraw from attention) from people who seem genuinely caring and thoughtful. With family and friends close enough to visit on a daily basis. The contrast between everyday life and this unit are huge. The return to school, while staying at the unit, is a way of assessing how he manages life outside that space and, hopefully, offering him help with dealing with the bits of life he finds hard.

So, Tuesday. As far as I understand it, it’s unlikely he’ll be sectioned again (way too much of a chill bear for that now), and there is some hope he’ll voluntarily choose to stay in the unit for a bit longer. But when read his rights, and it’s made clear to him that he’s no longer detained, he may decide he wants to come home. The only way then to keep him in the unit is if a team (made up of all sorts of people including a family member as far as I can tell, though we’ve not heard anything further) decide he doesn’t have the capacity to make this particular decision and it’s in his best interests to assign? apply? smack him with? a deprivation of liberty safeguard (DoLS). [Sorry, I’m woefully unsure of the language/way in which these things are articulated]. When I think back to a train journey home from a disability studies conference last Autumn with a colleague who was leading a study on DoLS and trying to explain to me what they were, I’m reminded of the speed at which LB deteriorated.

I’ve absorbed the gist of DoLS through this leaflet produced by the Department of Health easy read information. Not an easy read emotionally. I’ve been worrying about Tuesday. At many levels. From the enormous – wishing/willing your child to be deprived of his/her liberty is pretty horrendous – to the basic practicalities; would we get a call to come and collect him by 7pm at the latest (I dreamt this situation the other night)? And if yes, what would happen if he started to deteriorate again?

Then, at a meeting on Friday about our experiences of the last couple of months, a health/social care manager said in passing that the community team would have been in touch to start discussions around LB’s care plan for his return home. Eh? Wha? The ‘community team’? What’s that? The Care Manager? Someone else? These questions underline how crap adult services are. Or how I shouldn’t expect to work full time, as the mother of a learning disabled young person and, instead, take the time to fully investigate these mysteries.

But nah. No one’s been in touch about that (community team or anyone else ‘official’). Leaving the meeting, I gradually felt a sense of release. Not relief. We’re not going to have LB home without a proper care plan in place. We’re not going back to that place. We want him to come home. Can’t wait for him to come home with effective support in place. Support that’s supportive. And I don’t think that’s going to be sorted out for 7pm, Tuesday evening.

It’s funny really. You have a (learning) disabled child, the world kind of falls apart and then falls back together, bit by bit. There are unexpected highs, deep lows, challenging times and a backdrop of relentless meetings with professionals. These meetings are sort of necessary (because what else have you got without any reference points?) but pointless because there is a lack of real understanding or engagement with either your child, or your lives as a family. We eventually shook down, accepted LB’s difference and began to notice his humour, quirkiness and qualities such as generosity, lack of guile, artifice and his honesty. We treated the meetings with gritted teeth. And got on with life.

Then came the recent inpatient assessment and subsequent sectioning. I was tipped into mum redundancy (MR). Suddenly and without warning. The warnings for the impending hospitalisation were flashing brightly since Christmas, that was only really a matter of time (though it could have been circumvented with effective action). The warnings for MR were completely buried.

Call me old fashioned, but it strikes me if you have (not in an ownership way) children, you don’t really stop being their parent. I still tell Rosie what to do. She doesn’t always do it, but I feel I should provide some steer. My mum is still my mum. These are lifelong positions, that shift and change, but (commonly) remain centred on love, responsibility, reciprocity and a gut-wrenching desire for your child/ren to have the happiest, most fulfilling lives, possible. (I realise that this isn’t always the case).

This is confounded when the child is learning disabled and reaches that (constructed) age of adulthood. Necessary changes to the way in which learning disabled people’s lives have been conceptualised and understood, a shift from institution to community living, and the accompanying political call for self advocacy, autonomy and empowerment, has led to a focus on rights. I support this move completely. Learning disabled people, like anyone else, have the right to make decisions and be encouraged to have aspirations and the opportunity to lead fulfilled lives.

At the moment, LB has the right to decide whether he sees us or share his health information with us. The implications of these rights are substantial. The problem for me is, an emphasis on his rights can be misunderstood, misinterpreted, misused or treated as something discrete, outside of the broader family context. I believe, barring some thunderbolt shift in health and social care provision, that LB’s potential to lead a fulfilling and happy life will necessarily involve his family. For us to be sidelined at this point will have a potentially catastrophic effect on his life chances.

‘Eh? What’s that?’ ‘He could have an advocate. S/he would look after his best interests.’ ‘He turned down the opportunity to have an advocate. He doesn’t know what they are.’ ‘With clear explanation, he can decide to have an advocate. He’ll be offered one again in ten days time, by the terms of his section.’ ‘That’s great. But they won’t know him. Surely that’s important?’

Does our experience of LB’s family count for nothing?? Should an advocate be a substitute for that understanding, or instead complement it and work with families?

Once again we’re left without any guidance. It’s like being back at those early days when we knew there was something different about LB but given no guidance about what that meant, for him and for us. We’ve re-fallen into an unexpected space in which he is treated as a consenting and competent adult. A space which is so incongruent and so alien to our experiences of the past 18 years. Maybe it’s a good thing in theory. Maybe LB is at a stage in his life to shake off the confines of his family and do what he wants to do, without dishwasher duties or an expectation that he will join in social obligations. I don’t think so.

I keep returning to how this idealistic position ignores the current political climate and contraction of support and services for learning disabled people. As a redundant mum, I can use the hours I spent advocating for him (unacknowledged and unrecognised by services) doing something else. Like developing my beginner crochet skills,

Or maybe my/our expertise could be recognised and used to help LB in partnership with those who now (supposedly) help him realise his rights.

Went to Imperial Wharfe today for the first* steering group meeting of the British Sociological Association (BSA) Disability Study Group. The BSA have a meeting room right next to the London Overland Rail (another first for me). I got there a bit early and wandered around to take some photos. But there were no people. The Wharfe was deserted. It was odd and eerie. Just an enormously renovated space of emptiness. And “no” signs (skating, running, cycling, paddling, ball games, people).

Luckily the bus stop home is next to Westfield. I could have a people wallow on my way back.

So here’s the gig. LB is 18. Increasingly unhappy at school. Deteriorating in emotional well-being. The space for him to be happy seems to be steadily narrowing. Like those rooms on Tomb Raider with moving walls, or the ledge Batman stands on.

We work full time. Luckily with flexible employees/jobs that allow Rich to leave work at 1pm to collect LB from a residential school trip in Devon when it goes tits up, or one of us to be home at 3.15pm most of the week, with some help from family. This also means that we spend quite a lot of the weekend working.

We have a care manager. Or we did, briefly, until she organised the 2 hours of direct payments five days a week to cover after school ‘adult child care’ and discharged us indefinitely. ‘Successful at panel*’, she called it. Trouble is, ‘adult child care’ ain’t readily available. And two hours after school doesn’t solve the increasing problem LB has coping with school.

Things are not going well.

I met with a good friend this week who has a 25 year old daughter in a residential setting. She always amuses me with her refreshing, no nonsense, cut through bullshit, type approach to her and her daughter’s social care experiences (which have been up and down). This time she turned her focus onto LB. It was time to write ‘that letter’, she said, as we noshed on the early evening menu and glugged house white.

If we didn’t write ‘that letter’ to social services, saying we wanted LB to live independently when he finished school in summer 2014, he would get lost from the system. We needed to have ‘that letter’ on file. So it’s recorded. We didn’t want to be scrabbling around in crisis, in five years time, desperately trying to engage with social services and no space to be given any choice in his living arrangements.

This week I’m a respondent at a workshop on ‘Changing Models of Motherhood’. The session is about ‘non standard mothering’. I’m uncomfortable with that term for all sorts of reasons. I want to call it ‘different’, ‘hindered’, ‘frustrated’, ‘hampered’, ‘unsupported’ mothering. ‘Non standard’ implies a benign, though less valued, type mothering but one that is somehow still within the gift of the mother/child relationship.

LB’s current distress relates to external factors and is compounded (or created) by a lack of appropriate, timely, responsive rather than reactive support. I don’t want to write ‘that letter’. For me, it goes against what I consider to be ‘good mothering’, non standard or whatever. It seems harsh, punishing, unfair and I worry it will expel him to some, as yet unknown, space. A kind of containment. Experiences of social care so far have been pretty mediocre to downright crap. For example, the council funded sessions of peer buddying to take LB out and about, and the care agency sent a man in his fifties because there were no other staff available. I know that the rhetoric around choice and personalisation is hollow. There ain’t a meaningful choice.

So, writing ‘that letter’ fills me with dread. I know its got to be done. But I still don’t know why it does. It shouldn’t be this crap.

This weekend is officially a catch up weekend. Beyond boring but necessary. I started this afternoon with a mountain of paperwork and a canny system of ‘bin it’, ‘deal with it’, ‘park it’. The ‘deal with it’ pile had the carers assessment form on the top. Oh dear. Regular readers will know that this (mythical???) assessment has been dragging on for years. The form in front of me was different to the version I failed to fill in before (because it was beyond inadequate). I sat at the kitchen table, determined to fill it in.

So ‘caring’ is divided into ‘practical tasks’, ‘personal tasks’, ‘mobility’, ‘getting around’, ‘health’, ‘communication’ and ‘other issues’ (including mood swings, anxiety, aggression and so on). Each section includes a list of things to tick (‘communication’ has support with socialising, advocating, and interpreting) and a section for ‘carer’s views’. I ticked all the relevant boxes (most of em) but wasn’t sure where to start with my views. What does it mean?

“I’d hoped LB would be able to go out and about by himself but now, but suspect he ain’t gonna be able to do that for the forseeable future.”

“I find it pretty rubbish supervising an 18 year old boy in the bath.”

“It’s all pretty fucking shit really but it could be so much better if I knew that adult services wasn’t a big hole of crap-all.”

Anyway, I left the ‘carer’s views’ sections and got to the end of the form. Only to find this little beauty:

This form is the first part of a Carer’s Needs Assessment. Would you like a full carer’s assessment to be undertaken? Yes? No?

Now I don’t know who is coming up with this crap, and I don’t know what the intention is behind it. It’s obstructive, ill thought out, insensitive, meaningless and time consuming. I don’t know how many meetings I’ve attended thinking I’m ‘doing’ a carers assessment. Or having a carers assessment done to me.

When I started sorting through paperwork today, I was struck by how LB had his own folder of paperwork bursting at the seams. No one else in the family has a file really. Just general stuff. Why is there so much paperwork around certain children/adults when the outcome is less than acceptable? A ‘special needs industry’ exists in the UK with a wasteful, usually ineffectual and pointless focus. But embedded within that industry is a level of tyranny. That these are hoops that parents, carers and disabled people have to jump through. Regardless of outcome.

Over 15 years into this gig now, I’m going to say now, I seriously hate it.

Can we have transparency, honesty and realism about what is what? And what is likely to be what in the future?

The long awaited Carer Assessment form turned up recently. Regular blog readers will know that I’ve been a bit confused about this assessment, and wasn’t really sure if I’d had one or not. Given that LB is 17 and it was introduced over five years ago, I thought I probably had really [must have surely…?], but I hadn’t.

So. A Carer Assessment turns out to be an A4 piece of paper with statements and prompts on both sides. No instruction, no guidance, just a piece of paper. Not sure I need to say much really. It kind of speaks for itself. I’ll just flag up the bottom of the page (pictured) ‘Any financial problems‘ section, which has got no space to write anything other than ‘yes’ or ‘no’ but includes the helpful prompt; ‘Are you receiving the right state benefits for example?‘ Er, you tell me matey, And mention my favourite prompt under the ‘How you feel about continuing to care’ section on page 2;‘What would happen if you couldn’t care any longer?‘ Er, you tell me matey.

Not sure which dozy bunch came up with this ‘assessment’ but if I was marking it as a student assignment, it would get a big, fat fail.

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Yesterday we had a day out at Chessington. We’ve had mixed experiences of days out at various places in the past, so the bar is set fairly low. Chessington scored high early on, for us, yesterday with their sensible arrangements for families with disabled children.

Once you’ve provided paper proof that your child is disabled (yes really) alongside the child, you get given a card which allows you to go to the exit of each ride. A staff member lets you straight on the ride after writing down what time you can next use the card for a big ride (adding the equivalent of the queue time you’ve jumped).

This works well as you don’t have to walk past the glares and stares of the main queue, who have you pegged as liggers as your child “don’t look disabled”, and the time delay between being able to access big rides is fair enough. A good example of reasonable adjustment really, removing the difficult bit (queuing) for dudes like LB.

We started with the Rattlesnake. My first ever roller coaster. Tom and Rich in front, waving their arms in the air. Me and LB behind. I kept my eyes scrunched shut, gripping the handlebars and quietly whimpering. LB sat quiet, composed and distant, seemingly oblivious to height, speed, excitement or terror.